Friday, December 30, 2011

Allie pulled up to standing!

Allie was feeling a little rambunctious when Jonathan and I picked her up from daycare. She was laughing hysterically as we dramatically swerved her stroller around on the way home. We usually try to cram a bunch of exercise in when she is this happy because she thinks we are just playing with her. We started with tummy time and she rolled over from her tummy to her back a few times. Then, she held herself in a one-handed (Righty) plank off of my lap as she played with a light-up music board with her left hand. An abbreviated game of "let's go get it!" followed where we put a toy off to her right and she puts her weight on Righty to lean over and grab the toy with her left hand.

Then came the sit-to-stands. She starts on a little Allie-sized bench and works on building leg muscles by sitting on the bench and repeatedly standing up and sitting down. Either Jonathan or I usually sit directly behind her helping support her. Tonight, we put her toy walker that has a nice handle bar in front of her when she was sitting on the bench. Without hesitation, she reached up to the bar with her left hand and pulled herself right up. She continues to amaze me!

An update on the constraint therapy: Allie gets her formal evaluation on Tuesday. We were told that this will be a several hour event where they will do lots of tests to see where she is at physically and do different measurements of her limbs and hands. Assuming they don't find her to be unsuitable for therapy (which I doubt she will be), she starts the program on Thursday!

In other news, the head-shaping helmet is working out great. It finally fits properly and we are starting to see a little more roundness in the back of Allie's head.

Daddy and Me swim class starts next weekend. I'm excited to be the observer in this activity.

And, Allie's therapy schedule is getting adjusted so that her PT and OT through the Children's Hospital will be on different days. She currently has both sessions on the same day and the picture to the left is what she looks like after them.

What you can't easily tell is that she is vertical, wrapped in my sweater (which I am also wearing) in 40 degree weather while we wait for a bus to go home. I think separate sessions will help her not be so exhausted during the latter session and hopefully help her get more out of the whole experience.

Thursday, December 22, 2011

Merry Christmas From Allie

We flew into Minneapolis today and Allie is loving it! She slept takeoff to landing, got to visit Santa, and then played with her cousins Noah and Elliot.

Turns out, Allie LOVES Santa. All the other babies were screaming but she thought his beard was just too cool. I'm impressed because this Santa was particularly creepy.


Monday, December 19, 2011

Constraint Therapy and General Updates

Constraint Therapy

We found out the other day that Allie will be starting constraint therapy in January! We will be going to the Kennedy Kreiger Institute (KKI) in Baltimore. KKI typically works with kids over 2 years old, so Allie will be the youngest patient that they have ever had. The research seems to indicate that the sooner kids get this therapy, the better the outcome. We are excited!

Because Allie is so young, she will be doing a modified program. She will have a temporary arm splint instead of a 24/7 cast on her strong arm. The goal is to encourage Allie to try to use her weaker arm to build muscle and create more neural connections to her right side.

The therapy will start with one hour a day and hopefully work up to two hours, if Allie obliges. The only down side of this is that we have to drive to and from Baltimore everyday. Baltimore is about an hour away from our home. I talked to my boss today about adjusting my already half-time work schedule so that I can take her to KKI everyday. He was incredibly supportive and told me that it is something that we have to do. I love it there. Jonathan is also working from home on Fridays and will take Allie to therapy then so that I can get one full day of work in per week.


Another In Utero Stroke Kid

Allie does supplemental PT and OT at the Children's Hospital. The other day, a mom introduced herself to me to say that she overheard me talking to the therapist and her 19-month old son had an in utero stroke too. He was amazing. He was running around, playing with toys with both hands, and looking like an average kid. I know that it has taken him a lot of work to get to where he is, but it gave me a lot of hope.


Other Developments

  • About a week ago, Allie was playing on the ground surrounded by toys. Out of nowhere, she reached out with Righty, grabbed her pacifer with Righty, and brought it to her midline (the imaginary line of symmetry that runs up and down your body). I was very impressed so I gathered all of her toys, put them in her little toy box, and placed the box to the right of her. She reached over with Righty, grabbed onto the side of the box with Righty, and pulled the box close to her so that she could pilfer it with Lefty.

  • As part of Allie's PT regiment, she does baby push ups. I sit upright with my legs extended straight in front of me. Allie will lay perpendicular to me on my legs and do a plank position off of me. Allie can now hold this position for about 10 seconds, which is possibly longer than I could hold a similar position.

  • Tummy time is going well. Last night, Allie got both knees all the way under her. Today during OT, she stayed in the crawling position with little assistance for a few seconds.

  • Her Children's Hospital OT has started using kinesio tape on Allie's right hand and arm to help keep her thumb open and to help her rotate her wrist. This week was the first time we did this and it seemed to really help. This morning, Allie was sitting in her high chair with her right arm totally loose. Righty was relaxed with her palm partially exposed and pressed against her seat, making a nearly 90 degree angle from her forearm. As recently as a few weeks ago, her wrist was tight and difficult to get her to move. Now, she's loose and has her hand open.

  • Bonnie sent me an interesting article today about a type of constraint therapy that is being done in MN: http://www.startribune.com/business/135765123.html

How We Have Been Feeling

Jonathan and I have been trying to stay as optimistic as possible about everything Allie related. But, honestly, it is really hard. It is tough watching her struggle to do things that other kids can do easily. It is heartbreaking to do therapies with her that make her cry when all we want to do is play. It is difficult for us to really believe that this is what we have to do and that everything with Allie isn't perfect.

Bonnie passed this along today and it really hit the nail on the head for us.













Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley 1987

Saturday, December 3, 2011

Best... Tummy Time... Ever!

Allie was having some before bed playtime on her stomach tonight and she surprised us with a new trick. Tummy time is an everyday thing but somedays she likes it more than others. Tonight, she liked it a lot.

Jonathan and I were on the ground singing to her and she was pretty happy with it. All of the sudden, she started lifting up her butt by tucking her knees under her body. She tucked both knees under and was able to get her pelvis at least a couple inches off the ground. She's on her way to crawling! This was the first time she did anything like this.

Unfortunately, we didn't get a picture but here is a picture of Allie not enjoying her tummy time at PT last week.

Friday, December 2, 2011

Back in the Swing of Things


It has been a busy couple of weeks.

We went to the Bay Area for Thanksgiving to visit my family. Allie was a lap baby but we got lucky on the way there and she got her own seat. We weren't so lucky on the way back and she got a bit fussy, but that's OK. She got some good family time in.

Allie's therapy routine is getting changed up. She has started to do supplemental PT and OT through Children's National Hospital. We had her first PT session this week and Allie really liked the therapist. Allie will also be starting Special Instruction (known as SPIN) probably next week. SPIN is like a precursor to speech therapy because kids don't usually start working with a speech pathologist until they are about 2 years old. So far, Allie is not showing any substantial delays in speech but many kids with in utero strokes have speech issues. SPIN is a playful way of addressing any issues that might crop up.

We are also considering an intensive therapy in Baltimore called constraint therapy. Allie would have a cast put over her left arm so that she has to use her weaker right arm. Here is a cool video of a young girl who did a similar program in Birmingham, Alabama.

http://www.onetruemedia.com/otm_site/view_shared?p=b00f76e28c43e4a0c665e2

The Baltimore program is with the Kennedy Kreiger Institute. They have done a preliminary insurance evaluation and it looks like our insurance will cover the otherwise very expensive therapy. We found out that our insurance plan covers 100% of habilitative services, which means that they will cover absolutely anything that is "medically necessary" for Allie since her stroke happened before she was born. Allie is currently on the waiting list with Kennedy Kreiger and will be going in for an evaluation within the next 2 weeks. Allie's new OT has a now-18 month old patient who recently did the Kennedy Kreiger program and the she was overwhelming impressed at the progress that kid was able to make.

Here is some information about the Kennedy Kreiger program, if you're interested.

http://www.kennedykrieger.org/patient-care/patient-care-programs/outpatient-programs/constraint-induced-and-bimanual-therapy

Tuesday, November 22, 2011

Will the Weasel Ever Pop?

This is one of Allie's OT toys. She is supposed to press the button with her right hand. The problem is, Allie doesn't quite understand that the button makes the Jack-in-the-Box pop. This is a video of Allie exploring the novelty of buttons.


When Chickens Fly

First off, these pictures have nothing to do with how our day has been. They're just cute pictures from Halloween that I never posted.

Today was Allie's 9 month checkup with her pediatrician. It seems silly to have a "checkup" when we are seeing a doctor nearly every week, but it was nice to see a doctor without an urgent medical need. At one point, the pediatrician was looking in Allie's right ear and Allie shoved her away with Righty. Way to go Righty!

Allie's Stats:
Weight: 17lb 9 oz (23rd percentile)
Height: 28.25in (70th percentile)
Head Diameter: 90th percentile


It appears as though we have a big-headed skinny baby.

Speaking of her head, Allie also had a helmet adjustment today and has been excused from wearing the helmet for the rest of the day. She has a red spot about the size of a dime that needs to go away before she can wear the helmet again.

Lastly, Allie got some more blood work done today. This is her third (and final) set of massive blood work to try to figure out why the stroke happened. So far, everything has come back fine and we hope this goes the same. We really want the stroke to have been a fluke and not something that she has to worry about recurring for the rest of her life.

We are off to the Bay Area tomorrow to spend Thanksgiving with my family. Let's hope that our 5.5 hour flight with a lap baby goes well!

Saturday, November 19, 2011

Bend... and snap!

Allie has been working hard on her sit-to-stand and it is paying off. When she first started working on these, she would pike her left leg out, lock her left knee, and heave herself up by shifting her weight forward. Now, she bends her knees evenly and bears weight on both sides to stand up.

Her stand-to-sit is making good progress too! In the beginning, she wouldn't bend her knees at all. Her first PT said it was because Allie didn't trust herself enough not to fall if she unlocked her knees. She still sometimes hesitates before actually sitting, but she does it!

A major plus-side of all this exercise is that she seems to understand what "sit" and "stand" mean and she does them basically on demand.


Here are some pictures of her today. (left) Allie bundled up for a brief morning walk. (right) This was taken shortly before she flipped out and declared that she would not be wearing her helmet tonight.

Thursday, November 17, 2011

Helmet Head

Allie got her helmet!

She doesn't like putting it on or taking it off but she is fine once it's there.

We know this is for the best and that we're lucky that our insurance covered everything, but it is tough to see her in it.

She and I went to a local mall to fill some time before picking Jonathan up from work. There were several people who looked into the stroller and then quickly looked away and pretended that they hadn't looked at all. I'm glad that Allie is too young to know.

Allie will be in this helmet for 3-4 months. Hopefully her head growth will even out quickly and we won't have to do helmet #2!

Wednesday, November 16, 2011

Tuesday, November 15, 2011

Adventures in Eating

Allie has been getting pretty creative in her eating habits lately. We have been trying in vain for months to get her to drink apple juice out of a sippy cup, but she hates the idea of it. The second the weird sippy cup spout touches her mouth, she flips out.

Today, I discovered a secret. Turns out that Allie is just fine drinking the apple juice directly out of a regular cup. Check out her exploring the world of grown up cups (I apologize for the cinematography on this one)




Allie's favorite treats are graham crackers and her PT suggested that we put some in a spill-proof snack cup so that Allie can get some practice practically using two hands. The idea is that Allie will hold the handle with her right hand and reach into the cup through a weird rubber lid with her left hand to get the treat. This is a work in progress.




Believe it or not, she eventually managed to get one out. However, she was cheating a little and found a way to put the cup down on her bench and then she could reach in without the use of Righty. I can't blame her for trying.

Monday, November 14, 2011

Good Update

Allie was not very happy having to do occupational therapy this morning. The second she made eye contact with the OT, she cried. And then cried. And cried some more. Needless to say, not much OT happened today during her session. Allie's therapist, however, recommended some exercises for her to do when she is in a better mood.

One of Allie's new exercises is to hold herself up on the step in her bedroom. She loved it! I think her favorite part was that the cats came up to visit during it.

This is Allie getting used to the new routine.

























At the end of the OT session, when Allie finally stopped crying, her OT said that she was incredibly impressed with the improvements that Allie has been making. She said that Allie has made more progress than she had hoped for. Allie is starting to feel her left hand with her right hand and is continuing to reach out for objects with Righty. So, even though no OT was done during OT, it was still a useful session.

On a final note, Allie got through the wait list for additional physical therapy at Children's National Hospital. We start on Wednesday. She also gets her helmet this Thursday. She's a busy girl!

Sunday, November 13, 2011

It's Good to be Home!

Jonathan, Bonnie, and Allie picked me up from the train station today as I made my way back from Raleigh, NC. What a wonderful sight!

While I'm enjoying settling in back home, here are some of the photos that Jonathan sent to keep me company while I was gone.


Allie eating rice at the Indian restaurant down the street.




















Allie bundled up for a chilly Fall walk.





















Allie posing for her morning photo.

Thursday, November 10, 2011

Miss Personality

I left town this morning for a business trip, and am already missing the family! I have about 5 hours of my train ride ahead of me, so I started looking though old photos of Allie.

I think my favorite pictures are the ones that capture a little bit of what she is thinking. Here are some of my favorites:


"OK, so, I know that you have a hard time finding hats to fit me, but is this really what we are doing now? Why am I wearing a hat meant for someone twice my age and why is it still snug? But, on the plus side, I bet the ear flaps are going to be delicious!" (8 months old)

















"I said that I was tired. I said that I didn't want to do any more exercises. I told you that I was hungry and that I had a long day being a chicken for Halloween. WHAT MORE DO YOU WANT FROM ME?" (8 months old)


















"I'm going to touch the cat!!! Braahahahahhhhaaaaa!" (8 months old)












"If you have to put a sweater on my head to keep me warm, you probably should have just packed me a hat." (8 months old)



















"These workouts are exhausting!" (8 months old)




















"I look like such a grown up in Daddy's hat!" (8 months old)






















"What are you looking at?" (7 months old)












"Really, Grandma? Really?" (7 months old)




















"Come on, Mama! Just because I can stand, it doesn't mean that I want to stand! Give me some help here!" (7 months old)



















"OK... OK... I'm at the big kids' table now... DON'T MESS UP! DON'T MESS UP! What are the other kids doing? Am I doing it right? Must stay focused!" (6 months old)









Enjoying Daddy's company. (6 months old)





















"Why can't I just live on my changing table?" (6 months old)











Three-way staring contest. (5 months old)












"What is THIS?!? Is it going to bite me? Am I going to bite it? What is going on? Ekkk!" (5 months old)




















"If I sit in my chair and look adorable, Mama lets me stay in the chair. I'm going to stick with that plan for now." (5 months old)

Wednesday, November 9, 2011

New Goals

It is amazing how our idea of developmental milestones has changed. Yesterday, Allie's new PT said that Allie has all the positive signs of a good recovery with none of the negative signs. That, in and of itself, is worth celebrating.

Allie has made some dramatic improvements with her right arm this past week. She seems to have figured out how to control her shoulder, which means she can now wield her arm arm at will. It also means that with a little help grabbing onto an object, she can then move it around like she is doing to the rings in the photo to the left.

We always put her bunny Penny on her right side when she's going to sleep so that she has to move to her right to cuddle with her. On Monday night, I put her in her crib and put Penny next to her inert arm. I kissed her goodnight and started to leave the room when I realized that I had mistakenly put Penny on the left because her right arm was flailing around. That's a good mistake to make.

We have adopted a new game called "Kisses for Righty!" that involves dramatically kissing Allie's right hand (affectionately called Righty) and shouting "Kisses for Righty!" whenever Allie raises her right hand. She has quickly taken to this game and will now raise her hand and start grunting if we don't immediately acknowledge Righty with proper enthusiasm.

Yesterday, I was taking Allie to the doctor on the bus. Allie was cozy in the Ergo carrier, which is like a backpack that I wear in the front. When Allie is in the Ergo, our stomachs are touching and she usually just relaxes on my chest. Well, yesterday she didn't feel like relaxing. There was a very attractive yellow cord directly to my left (Allie's right) that signals the bus to stop when it gets pulled. Allie really liked this cord. So much so that she weaseled Righty out of the Ergo, reached up above her head, and gripped the cord. I was in shock, and it took me a minute---again---to realize that this was really Righty.

This was all great, but the best news of all came from her teachers at daycare today. Allie fed herself with Righty! The teacher, who is so very clever, restrained her left arm while Allie tried to figure out how to make Righty bring her the food. After a couple bites, Allie started to get frustrated so Allie's clever teacher broke the cracker in half so that both Righty and her left hand had some cracker. She ate all of the left cracker and then continued to feed herself with Righty.

We feel incredibly fortunate to have such network of caring people here. Her daycare teachers always go out of their way to find new things for Allie to try. She is the youngest of the six kids in her class, and she has some really great role models to look up to. Her therapists have also been fantastic. Her PT and OT come to our home every week and teach us strategies to help Allie.

Her pediatrician has been supportive and has helped ease the insurance burden. So far, our HMO (Kaiser) has covered everything that we have asked of them. Between my pregnancy, her delivery, and all of the doctor's appointments and specialists that we've seen, we have managed to pay only $120 out of pocket. Allie's therapists were both shocked that Kaiser is covering the head shaping helmet. Shocked.

I also had lunch with a local mom of a 10 year old who had an in utero stroke. She was able to give some great advice in terms of specific exercises and approaches that I hadn't thought about.

Allie's current PT and OT goals include:
  • Banging two objects together (one in each hand)
  • Clapping
  • Bearing more weight through her right arm and leg (hopefully enough weight to crawl soon!)
So far so good... fingers crossed!

Monday, November 7, 2011

Welcome!

Welcome to Allie's new blog! Jonathan and I are shocked at how quickly she is growing up and are so unbelievably impressed at how much Allie's hard work is paying off. We are glad that we can share some of her journey here with you.





As you know, Allie suffered an in utero stroke sometime around the end of her second or beginning of her third trimester. She didn't show any real signs of it for months! When she was about 4 months old, we started to notice that she was using mostly her left hand to reach for objects. After a few months of being assured that she would even out and that she was just a "strong lefty", her pediatrician told us that she suspected Allie might have a Cerebral Palsy and recommended that we get an MRI. The MRI identified the stroke and Allie's recovery began.

Allie now gets weekly physical therapy (PT), weekly occupational therapy (OT), and intermittent massage therapy. She also has a completely packed schedule with other doctor's appointments and specialists to help her on her way. Because she isn't very mobile, Allie's head is getting flat in the back. She will be getting a helmet (medically known as a D.O.C. band) next week to help her head grow into a more symmetric shape.

In Allie's free time, she enjoys eating new foods, throwing new foods on the floor, watching the cats, unpacking her toys from boxes, listening and dancing to music, shaking her head no, and playing with her friends. Her current favorite toy is Penny, a pink rabbit puppet that Papa gave her. Her favorite songs are "Row Row Row Your Boat" and "Wheels on the Bus". And, her favorite time of the day is bath time when she gets to splash around and get Mommy and Daddy very wet.

Below are some pictures and videos of Allie so far. For many more photos of her first couple months, click here: http://www.flickr.com/photos/60466481@N02/

Month 1 -- Napping in her bouncy chair



Month 2 -- Hanging out on her changing table



Month 3 -- Playing on her play mat



Month 4 -- Jumper!



Month 5 -- Allie waking up and Allie laughing at Daddy



Month 6 -- Squats




Month 7 -- Bye Bye Daddy!



Month 8 -- Playing with the spiky ball